Some Things to Consider

As Huntington's Disease progresses, it will become increasing difficult for an individual to perform his job duties. There are many employment issues to consider. This information is no substitute for legal, medical, and financial advice by qualified experts but instead is intended to be a helpful (but not comprehensive) review of some of the employment issues that Phds and family members have encountered.

Choosing the right insurance package.

It is very important for people at risk for having the HD gene or those who have tested positive to have good insurance. Some places of employment offer optional insurance that is desirable to have: - long term disability and long term medical care. Long term disability payments provides income to the disabled individual at some given percentage of his salary, usually 50 - 70 percent. Long term medical care covers payments for nursing home care. Many people mistakenly assume that Medicare or regular medical insurance will cover a nursing home stay indefinitely when in fact this is limited to situations when skilled nursing care is needed or when physical therapy is necessary. Even where it can be shown that the individual needs the therapy, Medicare requires an individual to make satisfactory progress.

Although the company may require the employee to pay the full cost through salary deductions, there is a benefit to the employee in in getting the lower group rates. If the employee signs up at the time of accepting employment or when the benefit first becomes available, he may be able to avoid filling out detailed questionnaires and getting a physical.

It is a good idea to review the insurance policies carefully to make sure that they offer the coverage that you would want and that they offer good value.

It is also a good idea to periodically review the policies that one already has so one can plan properly for a future in which disability is a possibility. As time passes, memory fades and employees are often surprised to find that they elected a different level of coverage than they remembered or that a policy does not cover exactly what he or she thought it did.

Could denial be affecting the individual's perception of his job performance?

It is not uncommon for someone who is affected by HD to fail to realize that his job performance has become adversely affected for that reason, especially if he is at risk and in denial, or even when he has tested positive and believes that symptoms are far in the future.

Denial could work against the individuals' interests if he leaves one job, thinking that it is only stress that is affecting him, and fails to complete a probationary period in the next job. Then the individual could be left without benefits he had counted on, such as long term disability insurance.

It is also easier to be the one informing the employer that a disability (HD) is affecting one's work, then to try to establish the case for this after one has been fired.

When is the optimal time to inform an employer that one has a disability (HD)?

Deciding on the optimal time to inform an employer that one has a disability - HD - can be difficult. On the one hand, an individual wants to earn at full capacity doing the work he or she has chosen for as long as possible and to avoid excessive scrutiny on the job. On the other hand, one wants to avoid being fired because of poor job performance. Issues to consider include:

• Will the person's physician confirm that he or she is now disabled by Huntington's Disease?
• Has the individual received satisfactory or good job performance evaluations in the past?
• When someone's job performance becomes unsatisfactory, are they given a warning before being fired?
• What behaviors can lead to an employee's being summarily fired from this work place?

In considering the issue of when to let an employer know that HD is affecting one's ability one's work, people have reported receiving helpful advice from their physician, social workers who work with HDSA chapters, their union representative, and lawyers representing their unions.

Before informing an employer that one has HD, one should be fully prepared for the employer to insist that one leaves work on disability immediately. This may not happen, but has been reported by a number of people in this situation, so it is best to be prepared for this.

Should an employee who is disabled by HD ask his employer to try to accommodate the disability?

People with Huntington's Disease who live and work in the U.S. may be covered by the Americans with Disabilities Act which (among other provisions) forbids an employer with fifteen or more employees from discriminating in hiring, firing, and promoting qualified employees. Disabled employees are qualified if they have the education, experience, skills, and ability to do a particular job as long as the employer makes reasonable accommodations for their disability. As one might expect, the meaning of 'ability to do the job' and 'reasonable accommodations' are the subject of interpretation, in places of employment and sometimes in the court system. Questions and answers about the Act can be found on this government web site: http://www.usdoj.gov/crt/ada/ada.html

Once HD affects an employee's work, should he or she try to keep working by insisting that the employer attempt to make these reasonable accommodations? Issues to consider here include:

• Is there a reason to stay on the job a little longer (for example, in two months the person would be eligible to retire on disability rather than just leave work and receive disability payments)?
• Is the employer proposing that the employee take a less stressful position that pays less? Long term disability payments through insurance companies are usually based on the salary being received at the time that the person lives the job because of the disability.
• What is the likelihood that accommodations would help?

- published on May 7, 2000

Provided by Marsha Miller, Ph.D., E-mail: marsha@hdlighthouse.org

Discussion of whether genetic discrimination on the job is prohibited by the ADA

Published by the National Workrights Institute

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